Our autism journey began on December 19, 2002. Nico was nineteen months old at the time and was this bundle of energy who could not sit still. He was skinny, had big brown eyes, impossibly straight hair, and a smile that could light up a room. He loved to be hugged but not for long as he was always on the move. At the time, I was six months pregnant with my second child and dealing with placenta previa (which causes severe bleeding during pregnancy and delivery). It was a typical Canadian winter: grey, cold, and snowy.
A month prior, my then-husband, Rob, and I had seen Nico’s pediatrician for his eighteen-month checkup. We had voiced some concerns about his development to the pediatrician: no eye contact, would not react to his name, he exhibited no joint attention (no pointing at something to bring someone’s attention to it, nor looking at something we were looking at). In addition, he had trouble going to sleep every night, had unexplainable tantrums, and was hyperactive. As for his language, it was extremely delayed compared to his peers. At twelve months old, Nico had had a few words like “mama” and “papa,” but as time went on, not only did he lose these few words but he didn’t seem to be making progress with his language skills.
When I took Nico to a park on a warm August afternoon at fifteen months old, I had my first suspicions that something wasn’t right. A mom was sitting on a bench near a sandbox watching her two twin girls play. She invited Nico and I to join them. I took Nico by the hand and asked him if he wanted to play with the girls. He didn’t answer but sat down beside them. I sat down beside the mom and we started chatting. When I looked over to the sandbox, Nico was no longer sitting down and for a second my heart skipped a beat. But then I saw him near the slide. Puzzled, I stood up and saw that he was circling the slide, over and over. At first, I just let Nico be and sat back down. Both girls were still in the sandbox, interacting with each other. They came over a couple of times to show something to their mom or point to things in the surroundings. Although they did not have much language, this did not stop the interaction. Once in a while, I looked over to where Nico was still circling the slide. I called him a few times to come and play but to no avail. After fifteen minutes, I said bye to the girls and their mom and went to join Nico. I sat him on a swing and pushed him. As I did this, my mind raced. I was puzzled about Nico’s behavior and lack of interaction. My gut feeling was that this behavior was not normal. But given that Nico was our first child, I just thought that he had a little development delay and that everything would be fine soon.
However, on that day at our pediatrician’s, my fears were confirmed. She referred us to Montréal’s Sainte-Justine Hospital for Nico to be seen at their Developmental Clinic by a multidisciplinary team of specialists ASAP. The word “ASAP” hit me with great force. This was not just a minor developmental delay. My son’s condition needed to be evaluated immediately. Suddenly, everything around me became a blur. The doctor kept talking, but I had no idea what she was saying; I couldn’t focus and I felt dizzy. I turned to my husband who sat there nodding, looking bewildered.
That day I went home and started what would become my ritual for the next several years—searching the internet for whatever I could find about my son’s condition. I began by searching with the words “language delay.” However, upon going through several websites and connecting the dots with the other symptoms, I realized that it was not only a language delay but a communication delay, and it was all pointing to the dreaded word: “autism.”
When I was making the appointment at the Sainte-Justine Hospital, the secretary had two spots available, one before Christmas and another one in the second week of January. She politely tried to convince me to take the one after Christmas, but Christmas holidays or not, we just had to know what was wrong with our child’s development.
Nico was seen first by an audiologist, a speech pathologist, an occupational therapist, and then a child psychologist. The diagnosis at the time: “suspicion” of an autism spectrum disorder. Because he was so young (nineteen months), we would have to wait until he was two-and-a-half to have a definitive diagnosis from a child psychiatrist. Then and there, our hearts sank. From my research, I knew that the earlier the autism symptoms could be spotted, the more definitive the autism diagnosis would be. Although I prayed that it was just a problem with his hearing, I knew then that my son was autistic and that this suspicion would only be corroborated by the child psychiatrist later.
But there was no time to cry, my first reaction was: what should we do now? Unfortunately, few answers were given to us. A tentative diagnosis was made but no specific treatment was proposed. Just a referral to our local readaptation center to put our name on the waiting list for Applied Behavioral Analysis (ABA) intervention services, the only therapy services that were offered at the time by the public health care system for children on the spectrum. And this is one of the hardest moments a parent of a child with autism goes through in their journey. You are told that your child suffers from a long-term condition which will affect their overall functioning for the rest of their life and all you are given is a paper to register them on a waiting list for public rehabilitation services that may come in a year or two, if your child is lucky.
Obviously, it was a very stressful Christmas. I was in a daze from that point on. A few days after Christmas, Rob and I met with a psychologist at the hospital who had kindly offered to answer some of our questions about autism, the treatments, and services that existed out there, and ultimately, how to cope. I’m still grateful for that offer. But more importantly, I’m grateful to him for being frank and to the point with us. And I still vividly recall his last words: “Be aware that your days of carefree living are over.” He was right.
So began the autism whirlwind or rather the autism tornado. First staying up all night doing research on the internet for treatments and therapies, going to the library and reading all types of books related to autism, trying to figure out where to go from here.
As expected, the waiting list for the readaptation center was about a year if not more! This was unacceptable. We needed to act now.—
TIPS:
- Don’t feel guilty if you didn’t notice the signs of autism earlier.
- A diagnosis brings with it many different feelings. Relief, happiness to have an answer, guilt, devastation, grief, fear, anger, overwhelm. Whatever you’re feeling is OK, you need to talk about it. Be open with close friends and family.
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